Survivor Stories -- Amy Tsubota
Before breast cancer happened to me, I have to admit I just didn’t think about it. With no family history and living what I believed was a very healthy lifestyle, it wasn’t part of my thoughts or worries. I look back on that time of innocence as a blessing. Ignorance was bliss, and I didn’t even know it.
I was living the happiest days of my life Memorial Day Weekend 2017, when I found out I was pregnant. In the week leading up to my first OB appointment at 7 weeks, I had been feeling around as my breasts were changing rapidly and becoming sore, when suddenly I felt a lump on the left side. It didn’t strike fear in my heart, but it registered as, “I’ll have my OB appointment next week, and if it’s anything concerning, they will point it out to me.” I chocked it up to pregnancy and continued feeling excitement about our family becoming a party of 3.
When the first OB appointment day arrived, I waited for the breast exam and sure enough, my doctor found the lump. She referred me to an ultrasound, just to make sure it wasn’t something that needed to be looked at further. I was honestly surprised she was able to feel it at all, and the radiation oncologist read my mind when he said pregnancy makes it harder to identify lumps and that he was surprised too. I went from an ultrasound to a biopsy on the same day, and I continued to think it was all “just to be safe,” but my OB had only mentioned having an ultrasound.
When the radiologist came in to talk about the biopsy, she said “we are going to schedule an appointment to consult with a surgeon. We do this because it’s so hard to get on the schedule for a surgeon. If we don’t need it, then we will cancel it.” She couldn’t confirm what she had seen on film before the report was written up and delivered to my OB, but the way she was talking and the speed with which they were moving through each next step made me afraid. Fear took over, tears were streaming down my face, and I called my mom from the parking lot to let her know something wasn’t right.
On July 12, 2017, at ten weeks pregnant, while sitting at my desk at work, the phone rang with the official results and the confirmation that I did have a reason to be afraid. The nurse confirmed I had breast cancer in my left breast…over the phone. Why they didn’t set up an appointment to tell me, I’ll never know. I was desperately trying to hold it together at work and when that didn’t work, I called my mom to come and get me because I didn’t have a car to escape as I worked downtown and commuted by bus. She came, and we cried and prayed together the whole rest of that day. I have never seen my mom take anything that hard, saying she wished it was her and not me. I lost all my joy in my pregnancy, and if I’m honest, to this day I still feel totally robbed. This was our first baby and all the excitement was lost to worry that I needed to fight for my life or lose everything. There wasn’t even time to feel sorry for myself. Because of my age and circumstances, I needed to start treatment immediately.
I’ve learned that 1 in 3000 pregnant women are diagnosed with breast cancer. In my case, it was not pregnancy induced because at 7 weeks along, my lump was already palpable. Breast cancer has to divide 30 times before it can be felt, and if each division takes one to two months, by the time you reach the 30th division, the cancer has been in your body for two to five years. I was 31 years old when the 30th division of those rogue cells took place.
They fast-tracked me through a consult with a breast surgeon, an oncologist, and a radiation oncologist. The vibe was definitely no time to lose, and they scheduled all of these consults on the same day. From the start, I felt compassion and understanding from my surgeon. From the other two members of my team, I felt nothing but the business of cancer, as if I was a case out of a textbook. You need to believe that your team is on your side, that you aren’t just a file and a statistic. These experts in their fields present what they believe are the best options, but in the end you have to call the shots. I really needed to believe in my team.
I decided a second opinion was necessary, so I spoke to a surgeon outside of my healthcare team who had operated on a coworker and friend of mine who was also recently diagnosed. That was where I first heard someone suggest that chemo might not be necessary during pregnancy if I were to have a mastectomy and do the Oncotype DX test. This test measures the likelihood that you will have a distant recurrence. Instead of just blanketing everyone with chemo hoping it does “something,” it weeds out the ones who will get the most benefit vs those who have a type of breast cancer that doesn’t necessarily benefit from chemo.
The first oncologist I consulted said I could have a lumpectomy, chemo in my second trimester and then after the baby was born, radiation. I immediately started crying. I didn’t want to lose my hair. Sounds selfish and superficial, but there it is. I didn’t want to lose all these parts of me – no hair, a deformed breast, 31 years old and married only one year. I felt guilt for my husband who didn’t plan on this and feared what chemo would do to my baby in utero. I learned there are two types of chemo that are safe during the 2nd and 3rd trimesters, and the birth defect rate for babies born after chemo is comparable to the general population. But there was no research I could find after the age of 7. Would my baby have behavioral issues? A higher risk of cancer or other health issues? I was worried sick.
I had a lumpectomy at 13 weeks, barely in the second trimester, to take out the cancerous lump. They did not want to wait because they were concerned the tumor was aggressive, as it often is in women diagnosed under the age of 40. After they took it out, I found out I was stage 2A. Three lymph nodes were removed, and there was no cancer found in there. Praise God!
I was so scared because all I could think about was my baby and how the anesthesia would pass through. The nurses let me hear my daughter’s heartbeat before and after the surgery to reassure me that all was well. I still remember how very compassionate that was and the comfort it gave me during a terrifying time.
My next OB appointment was the first time I saw the doctor who had sent me for the “just to be safe” testing. I hadn’t seen her since all hell had broken loose and I’d been handed off to the oncologists. I could tell by the look on her face that she was so sad for me. She didn’t need to, but she apologized for how things had gone down and said she never thought that it would actually be breast cancer. I thanked her for being thorough—and basically saving my life by not just going with her assumption that it was just the normal breast changes of pregnancy. I said good-bye to her as I was then passed off to a higher risk OB, but she kindly offered to be an additional resource for questions and said she would let me hear my baby’s heartbeat anytime I wanted to, just make an appointment. You never forget these moments of humanity and compassion.
I was freaking out before my surgery because I had been consulting with the second opinion surgeon, who was telling me to do a mastectomy. My surgeon said a mastectomy was too aggressive and I would have to be under anesthesia longer, and because I was pregnant, I wouldn’t be able to have reconstructive surgery right away and thus cosmetically, it wouldn’t be a good result.
Prior to surgery, I basically let go of my entire team and replaced them with an oncologist and radiologist that I felt were right for me. Switching those two providers was the best decision so that I had peace of mind and confidence that the right people were managing my care. I stumped all of them at times, as they had to discuss my case several times at their tumor boards because they were at a loss as to what to do, especially when I made the decision that I wasn’t going to have chemo. Never once did they make me feel like it was the wrong decision. I went back and forth wondering if I was making the right decision. I want to survive. I want to live for my baby. I want to give my child the best start in life possible. I worried that every time my baby got sick, I’d think it was because I had had chemo. I couldn’t in good conscience do it. I had the Oncotype DX test done and if you score between 0-18 then the benefits of chemo don’t outweigh the risk, and I scored a 19, one outside the range. My oncologist told me that if I skipped chemo but did hormone therapy to block the estrogen receptors on my cancer cells, then it would only be a 12% risk of recurrence where if I did chemo + hormone therapy, it would be a 5% chance. Statistics meant nothing to me at that point because I was already 1 in 3000.
The waiting period after surgery while waiting for my baby to be born was excruciating because I couldn’t have radiation or start Tamoxifen until after the birth. It was not easy to get to a point of peace around rejecting chemotherapy. I always thought I would be the person who did whatever the doctors said to do. I had to become my own advocate and make the choice that was best for me and my child. I don’t have any regrets to this day. I couldn’t find any moms to talk to who had gone through chemotherapy while pregnant or ones who had had to make such a fateful decision. I want to be there as a resource for the next mom who goes through this. There’s no wrong answer. You have to be there for your child. It’s ok for another mom to choose not to or choose to do chemo. Everyone has to find their own peace.
The plus side of a high-risk pregnancy is you get to see your baby every 6 weeks on ultrasound and get visual reassurance that everything is growing on track. I was so thrilled to learn she was a girl. I was saying out loud, “I just want a healthy child,” but I didn’t tell anyone, not even my husband, that I secretly wanted a girl. I know her risk of breast cancer will be higher than average, but I prayed for a girl. That’s what my heart needed. I dreamed of cuddling with her and… turns out, she’s not much of a cuddler. She’s the complete opposite, although improving! Careful what you wish for! I knew I was in for it on day 3 when she showed me her full vocal range. I ended up making the decision to be induced at 37 weeks because they wanted me to start radiation as soon as possible. I know 3 weeks doesn’t seem like a lot, but waiting the full 40 was just too long.
Labor was a 56 hour process, with contractions from hour 12 on. I got temporary relief with Flexeril but they could not give me an epidural until I dilated to 3cm, and I wasn’t dilating quickly. The epidural wore off. They took out the epidural and put in another one, but it didn’t kick in in time. My delivery ended up being completely natural. My daughter was sunny side up and stuck around my pelvic bone. Nothing is easy about her!
I got two weeks to relax and bond with Amani, whose name means “peace,” and I was not able to breastfeed out of my left breast. My surgeon thinks he preserved milk ducts for my next pregnancy, but they didn’t want any blood circulation going there while I was going through treatment. I was happy to be able to breastfeed on the right.
I started radiation in February 2018 and underwent six weeks of treatment, five days a week. I continued to be able to hold Amani and feed her on the right side. At each radiation appointment, they would tape the right side down so it would stay out of the line of treatment. Every day before I arrived, I would need to pump so that I could make my breastfeeding side as flat as possible before they taped it down. Radiation causes fatigue and when you add that to the fatigue of new motherhood, you get an extremely difficult few months. Amani woke up every 1.5 – 3 hours all night long. I couldn’t have asked for a more amazing husband. Because I was supplementing with formula to make up for my left side, he would take every other feeding. If I was too fatigued, he would get up with her to let me sleep a little longer. My mom stayed two nights a week during radiation, and she would sleep with Amani and take care of her so my husband and I could both pass out.
Looking back, radiation was probably the most difficult time for me. I felt so depressed and irritable all the time and wasn’t getting enough sleep and felt like I was supposed to be enjoying every moment with my new baby, but instead I was too exhausted to feel much joy. I can’t decipher whether it was post-partum depression, the cancer or both. I’ll never know…just like I’ll never know what a carefree, normal first pregnancy would have been like. I try to enjoy my time with Amani and give her all my attention right now, especially to make up for how emotionally trying the early months of her life were. And during pregnancy, I was trying so hard in the midst of everything to avoid stress, because I didn’t want to stress the baby growing inside me, and it just stressed me out even more! My sister said “babies are resilient, and there are so many babies who have been exposed to drugs and alcohol, and so many still come out healthy and fine! You aren’t stressing your baby.” I needed to hear that from her, and I take it to heart because she’s had three kids.
A month after finishing radiation, I started Tamoxifen, my hormone therapy. I have to take it for the next ten years to prevent the breast cancer from growing back somewhere else. I have a higher possibility of getting a recurrence in my lifetime because I was so young at diagnosis. That’s why they recommend ten years of hormone therapy instead of the standard five. Tamoxifen has affected my mood significantly. The post-partum depression went away but anxiety and extreme irritability came out of me instead. It was difficult to control my anger, and it would drive me to tears of frustration because I was trying so hard to suppress feelings of rage. My oncologist put me on Lexapro even though I really didn’t want to take more drugs. I work in behavioral health and am very familiar with psych meds. Even though I was nervous about taking Lexapro, I told myself it was ok to accept help. I didn’t want the out of control Tamoxifen-induced mood swings to affect my marriage and family. I also didn’t want to quit the anti-cancer drug that was the best insurance policy I had to prevent the breast cancer from growing back. I had no choice but to keep taking a drug that was making me feel crazy and to add another drug to counteract that awful side effect. The Lexapro ended up being just enough to calm me and allow me to better deal with my emotions.
The doctor’s recommendation was to wait at least two years before trying for baby #2. I would then need to do a 6 month wash out from Tamoxifen before even being able to try to conceive. There can be no accidents, no going with the flow. Everything has to be planned out around potential danger to my health and the health of baby if I were to become pregnant while taking Tamoxifen. I’ve now been on Tamoxifen for about a year and feel different, but it’s become part of who I am now, and I’m accepting it in order to fight the cancer, but my body doesn’t feel at all the same. Childbirth in combination with Tamoxifen equals Mom brain + drug brain. It may not be as bad as the forgetfulness and memory loss that chemo brain causes, but it’s not fun to feel pieces of who you are slipping away. Justin, my husband, is so patient with me. A week or so ago I got frustrated because I used to have the best memory, and now I walk into a room to go get something and can’t remember why I’m standing there. I feel like I’m too young for this, and I don’t like it at all. I truly had the best memory. Now if I don’t write it down right away, it might not come back to me. This wasn’t supposed to be my life, but I’ve come to accept that there’s no way around it…I’m thankful I have a strong will and faith to get through it.
As if all of this wasn’t enough to have to deal with, in December 2018 I started having daily dizzy spells. It became extremely worrisome, so I contacted my oncologist. She ordered a brain MRI for me. In January 2019, the brain MRI came back showing a mass growing in my brain. Next thing I know I’m being sent for a full body PET scan. They say it’s NOT a recurrence of the breast cancer, but a glioma on my brain, and there’s no way to confirm whether or not it’s cancerous because of where it’s located. It’s too high risk an area to even put a needle in for a biopsy as it could cause permanent motor damage to my right side.
The good news? If they were to stage it, it’s a stage 1-2. Not very big and not growing rapidly. These types of tumors fortunately don’t spread to other parts of your body. The plan is to monitor with scans, so I had another MRI with contrast in May, and it came back showing the tumor unchanged. I’m now going back every 6 months, and we will see whether this brain tumor is staying the same or growing. I now see my OB on a routine basis (the one who found my lump) and she shared that her daughter in her 20s was diagnosed with a brain tumor, and they’ve been monitoring her and now it’s a scan every year and nothing has changed for the past 5 years. You just learn to live with it and hope for the best. The neurosurgeon told me the dizzy spells were unrelated to my tumor, but I need to monitor for weakness on my right side or seizure activity to make sure nothing is changing. I was sent to a HEENT doctor, and it turns out I had TMJ in my jaw, and I’ve been doing exercises and have felt pretty good ever since, with only occasional dizzy spells that may be related to a mild form of vertigo.
Every day is a work in progress. I can have good days, a good week, a good month, and then the anxiety creeps back in. I am guilty of being stuck in my thoughts at times and am trying to find healthier ways to deal with them so I can go to bed at night. I try not to google too much. I turn to my faith in God, and that has helped me the most with inner strength and calm.
My best advice to you if you’ve read my story this far is to do your own breast exams! If you are scared and don’t know what to feel for, go see your doctor, ask for an exam, and have them educate you on how to do it so you always know what feels normal and what is supposed to be there and then you can keep track of anything new and different. I would also say fitness is essential to prevent breast cancer, to help you move through treatment, and to give you an edge in preventing cancer from returning if you’ve already been diagnosed. I discovered a new passion for barre classes because it’s a form of exercise that is low impact and works my entire body. My sweet husband bought me a barre for my birthday in June and installed it in our home, so now I can do videos while Amani naps on the weekends or during my lunch break since I work from home now. Fitness is definitely a source of mental and physical therapy for me! Because of the surgery, scar tissue, and radiation damage that makes my left breast tissue more firm and tight and my right side where breastfeeding sucked the life out of me and deflated it, I am definitely asymmetrical, but Handful bras and pads do an amazing job of making me look even and helping me feel whole again, and their fabric provides comfort even with the lifelong discomfort of long term radiation effects. I am honored to share my story with Handful’s community of women supporting women!